La Société Française de la Mucoviscidose (French Cystic Fibrosis Society)
Created in 2004, the French Cystic Fibrosis Society (Société Française de la Mucoviscidose, SFM) is both the Federation of rare disease reference centers and a learned society: it groups the professionals involved in the disease for care (hospital and private practice), care support (notably genetic, biology, and microbiology laboratories) and research (fundamental, clinical, and translational). This is an organization for reflection, dialogue, and proposals concerning the organization of cystic fibrosis healthcare and research.
https://muco-cftr.fr/index.php/fr/la-filiere/la-societe-francaise-de-la-mucoviscidose
L’association Vaincre La Mucoviscidose (French Cystic Fibrosis Association)
Created in 1965 and recognized for its public utility in 1978, it is managed by an elected board of directors composed for the most part of parents and patients as well as physicians, researchers, and supporters, all volunteers. Professional employees implement the actions serving the four missions of the association: heal, provide care, live better, and raise awareness.
The Network’s partners
The rare disease reference centers (CRMRs) and the cystic fibrosis resource and skills centers (CRCMs)
The Network includes one coordinating center, four constitutive centers, and 42 CRCMs.
- Coordinating center (Cochin, Paris): the center with the longest active list of adult patients, highly involved in academic and industrial research and internationally recognized. It is an approved center within the European reference network (ERN Lung-Cystic Fibrosis).
- Constitutive center (Lyon Sud Hospital, Lyon): second adult center (excluding transplantation), it is notably developing projects around adult late comorbidities. It is an approved center of the European reference network (ERN Lung-Cystic Fibrosis).
- Constitutive center (Necker, Paris): second largest pediatric center in France, it is recognized for its scientific expertise and translational research. It is an approved center of the European reference network (ERN Lung-Cystic Fibrosis).
- Constitutive center (Fondation Ildys, Roscoff): this center has long been specialized in therapy education and the improvement of healthcare quality.
- Constitutive center (Foch, Suresnes): this site possesses recognized expertise at the national level, recognized by professionals and patients, in lung transplantation.
Local professionals
Healthcare networks
Genetics laboratories
Lung transplantation centers
Research laboratories